Getting a Wheelchair...

I have just begun the process of getting a wheelchair.

More and more, I find that on my 'good days' I am starting to feel stir crazy.  The first thing I want to do is get out of the house.

This is a huge change for me because during the past several years I have not even had the desire to go out and do things.  Whenever I did try to go out the resulting ANS storm and neck pain flare almost erased any of the joy that came from venturing out.

Now, I'm starting to be able to enjoy some short outings. The problem: I'm more mobile than I've been in a very long time, but not quite 'mobile enough' to manage the types of outings I'd like to be able to do. The most difficult outings involve any sort of standing still.

Recently we went to Home Depot to pick out paint colors for my new bedroom. I used a wheelchair at the store and was able to sit up with my feet down and look at paint colors for an hour. I was pretty excited about this! This outing was a huge turning point for me. I think it really got me thinking that it was time to get a wheelchair. 

Despite my initial reservations about using the wheelchair, I was able to really focus on looking at the paint colors rather than trying to figure out a way not to pass out by crawling, sitting and lying on the concrete floor. I left the store tired with my ANS going a little crazy, but not having an awful spell.

I also felt incredibly empowered to be able to go to the store and make my own decisions.

Before now, I've tossed around the idea of a wheelchair on and off. Jeannine has really encouraged me for a long time now to get one. Until now, though, I wasn't physically or emotionally ready to get a wheelchair. 

It's just been in the last few months that I have started to be able to sit upright for any period of time. I still have a long ways to go on standing time and walking time though, so that's where the wheelchair comes into the picture.

Just a few days ago, I emailed Dr. ANS about the possibility of a wheelchair and whether it could help to enhance my life. As I wrote the email, I was shaking and anxious.

Here is his lovely response:

As for the wheelchair, I am all for wheelchairs as a mental health device. It is so much better at all levels to be outside, engaged with the wider world, even if that means using a wheelchair than it is to be inside without one, more isolated and confined to a restricted range of travel. You obviously want to walk as much as you can, so I am not worried about you using it as a crutch. Sometimes pushing the wheelchair as far as you can is a safe way to increase walking distance without worrying that you'll run out of gas and have no simple way back to where you started.

I received my prescription dated March 17, 1009, in the mail last week. Today, I mailed it to the place I will be working with to get the wheelchair that is right for my needs.

I wish it wasn't true, but I admit that this process has been incredibly difficult. Just saying the word wheelchair out loud to myself and to others, seeing the prescription made out to me for a wheelchair, looking online at wheelchairs, calling the place that sells the wheelchairs, and dialoguing with other wheelchair users has filled me with anxiety.

I'm incredibly, incredibly grateful for the support of other wheelchair users who have helped me to see why I am ready and need to take this next step towards more independence and freedom.  I have many friends on DINET who use wheelchairs.  Reading the emotions that they felt going through the process of getting a wheelchair, as well as how they feel now that they use one has been invaluable and reassuring.  I watch how Melissa, Rachel, Corina and others are able to participate more in life because they use a wheelchair.  Heck, Corina found a way to have her son push her on the ice skating pond! 

I also send out a huge thanks to Sarah, my classmate who lives here locally and is a paraplegic, for both her honest blog about her own experiences and her personal emails. 

Rebekah, who is trained in rehabilitation services and as an occupational therapy assistant has also been walking me through the process.  She is able to say to me: "If you're even thinking about getting a wheelchair, it's time." or "Yes, it's normal to feel this way. It's normal to have panic attacks."  She's able to frame how difficult society makes it for us to have a visible disability.  I've been needing a LOT of emotional support from Mom, Dad, Jeannine, Maxine and others as I go through this and they've been giving it big time. 

I'm just starting to tell my friends who are not wheelchair users, which is why I am writing this blog.  Because I am still scared and anxious and overwhelmed by it all. If I didn't tell you yet about this new step in my life--and that would be most everyone reading right now--it's because I just didn't feel ready yet. Until now. And in this format.

I continue to alternate between panic and fear and a feeling of freedom and excitement.

What I know and have learned so far (from the wisdom of Rebekah, Sarah, Maxine, Jeannine, Melissa, Corina, Rachel and others...):

• This is a stepping stone. It is a step forwards, not backwards. 
• It is a step towards more independence
• It will give me more freedom
• Right now, I have been able to keep my illness invisible. By getting a wheelchair, I am making my illness visible. Sadly, our society still makes this very, very difficult.
• Using a wheelchair is, in a way, asking for help even if the 'help' makes me more independent, rather than less. 
• It's also a way of receiving help. Along with asking for help, this is another thing I'm not so good at.
• In a poll on DINET I learned how many people choose not to use wheelchairs because of pride and ego.  I know I'm guilty of the same. 
• Now I'm ready to try to overcome that obstacle and participate in life more.
• If I allow it to, a wheelchair can mean greater freedom and feel liberating.
• This is a beginning

What I hope is that having a wheelchair will make it possible me to participate more fully in life, as Dr. ANS and others have said so beautifully. 

Last summer when we went to the fireworks I was thrilled to be there. I could walk to where we were sitting, but once we got there I was stuck and the walk to the bathrooms was too far (and you know how often I have to pee)! Then a few weeks ago Mom and I went for a drive and stopped at a lovely park with great paved walkways. All I could think was how wonderful it would be to 'go for a little ride' and take in some new scenery and some fresh air.

As the summer approaches, I'm anticipating nice weather and visitors. I'd love to be able to tag along a bit more for outings.  My parents usually take friends out for ice cream and for a walk around town. If I were to go along right now I'd be able to walk from the car to the famous ice cream eatery but I wouldn't be able to make it back! So I stay home and feel like I'm missing out. With a wheelchair, I think that I could tag along.  

I'd also love to be able to go shopping a bit! I've been trying to go shopping for stuff for my new bedroom, but I'm always rushing in and out because of the standing time required. I'm so focused on my symptoms or finding a way to sit on the floor that it's difficult to focus on the task at hand.  Shopping is already difficult because it causes so much over stimulation of the ANS, but a wheelchair would at least eliminate crawling on the floor. I'd also like to get some cute spring clothes. With a wheelchair, I'd actually be able to go to a store to look at clothes rather than have my mom bring piles of clothes home for me to try on.

If I run into someone I know, I never quite know how to handle the situation. Plunk down on the ground, wherever that may be, so that I can talk to them? Tell them I can't stand up and I'm sick all within the first breath when I haven't seen them for years? And what about in stores or bathrooms when there are lines? 

I know it's going to be very difficult to take the next steps of trying wheelchairs, getting fitted, and actually using one in different places. I also know that running into people I know won't be easy. I'm sure I'll start out going to places that aren't very busy and at off-times. I know I'll have episodes of 'wheelchair embarrassment' as Melissa calls it. And I'll hope my darndest that being in a wheelchair will still be less awkward than sitting and crawling on the floor. I'm also worried about my own friends adjusting to this all. How will they feel pushing me in a wheelchair or having me roll along next to them as I wheel myself?

It's a big change. I'm full of anticipation--both the kind that creates excitement and the kind that creates 5 AM panic attacks. Knowing this is the right choice doesn't reduce the anxiety.

Something very big has been shifting inside me lately--spiritually, emotionally, and physically. It's all happening so quickly I can hardly keep up. I know that getting the wheelchair is part of this. It's part of saying: This is my life now, and I'm going to find a way to live it to the fullest.

I know this is a long post. Deciding to get a wheelchair has been a very challenging and also exciting experience.  As always, thank you for journeying along with me. I'm incredibly grateful for my blog as a way to communicate and incredibly grateful to you for reading. If I've been extra quiet lately, all of the changes going on in my life are part of the reason why. So, having my blog really helps me to stay in touch.

I hope I get to pick a pretty accent color for my wheelchair. Shall I go with pink?

Now, I'd better hit the publish button before I chicken out!

Blessings,

Emily

Photo:  The forsythia last weekend. Just budding. Just like me.